Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

5.24.2011

I have been lost. This happens from time to time - in taxis en route to....?, yes, it's 1995, how did I get here?, where is my shawl?, where did all this blood come from?, my chin's split open!, did I fall? was I mugged? pushed accidentally? and when? and where? and how?

Since we last saw each other, I've lost my voice - the CRPS taking over more of what was once mine. But my voice has returned, speaking and vision (take this how you like). And I lost you in the crossfire. So, how have I existed these past few months without you?!

If I answer, I'll give away the punchline, much like premature textulation(TM)*. Please forgive me. I'm excited to be here, to say hello and send gentle air hugs to my brothers and sisters, my non-neuro friends and family, readers and new readers too. We have a lot of catching up to do - more than I can recall (lucky you).

Being sick, recovery, relapse, see then not, a blur, double, triple, quadruple, kaleidoscopic, multidimensional as though a person becomes 2, 3, 4, of itself sideways and back ways - 8-dimensional "sight". This is called living like Sisyphus, better, worse, up, down, stand, sit - just for a moment, bed-ridden, hospital-living, home-bound, out-bound with caution: the right shoes, the necessary accessories to protect this angry body and its burning skin from the vicious knife-throwing wind, crippling cold, or heat that melts what muscle we own - temporarily as it is, even our eyelids, napping beauty.

I'm embarrassed by my absence. My weakness. A sadness that waffles among hate, fatigue, active ignoring - the phone, the people I love who are ignoring me, leaving me, forgetting, sick of a sicko with bravado. This winter and spring I relapsed and relapsed and relapsed and relapsed with flares and flares and exacerbation after exacerbation.

TRIFECTA ATTACK

The trifecta, all three of my neuro disorders, turned on me consecutively and then for the finale in concert. Scarier and more than "more" upsetting than the CRPS flare that took my breath away (truly) or the back to back MS exacerbations, was my first TM relapse - 3 months after my 2-year recovery mark.

Lucky

This time, my organs were paralyzed rather than my mobility. Whew! The last weekend of my family visit to Pittsburgh, I filled it with a first-class party in one of Pittsburgh's esteemed hospitals, known as Presby - where, without an adult CRPS specialist anywhere in Western PA, they kicked me to the curb the morning after I arrived by ambulance. Short and sweet and useless. Had I been in Philly, that would have resulted in at least a 1- or 2-week respite.

That Ain't My Ho'Po

In the ER, my entire body convulsing in myoclonic seizures like a pissed off horse holding a 3-hour grudge they quickly got me into a room, as I was scaring the other ER attendees and some residents too. Once in my aproned-off room, still myoclonic and my bladder frozen and uncooperative, filled with 1600cc - enough to Wow! both of my nurses, as well as the idiot resident who squeezed my hand like a corporate power shake then slapped her unusually large hand down on my thigh.

Needless to say, as I was having my bladder professionally drained, I schooled the daft resident in CRPS symptomology and etiquette.

Let's Celebrate!... before and after we mourn.

I finished the wild weekend, weak and in heightened CRPS pain enjoying the company of my family, especially the cuddle time on the couch with my grandmother, not knowing that would be the last time I'd see her, my nieces, and my bro, during the part of the year - my 7-year-old nieces birthday party!

Which, by the way, I plan to party like a single-digit-year-old this birthday year. Theme suggestions anyone? July's a comin'.

Having gone through divorce, becoming a full-time patient with three neurological disorders, two of which are very rare, incurable and misunderstood, I've learned, or rather taught myself to live without expectations, or at least try my damnedest .

Huh? Shit, I forget where this paragraph was going. Neuro Brain.

I'm no Schwarzenegger, but I'll be back (with a heavy German accent).
Pardon me, while I pause for a day or 2 while my brain recovers. I'll return with the rest of part 1, and hopefully I'll even get to part 2 in the same post.

To be continued...

PS There are about 10-15 unfinished posts wasting away in my draft queue. By quick glance, some of the titles look pretty juicy. Don't be concerned if you come across a brand-spankin'-new post dated in 2009, but stepping out in 2011. This time, it's not dementia - most likely. I'm attempting the neuro-impossible: to finish what I start.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.